Michael McHale , 2025-05-16 07:30:00
Ahead of World IBD Day, Crohn’s and Colitis Ireland have published a new conversation guide to aid better understanding of gastrointestinal conditions among the public
It’s a condition that few people talk about. Around 50,000 people live with inflammatory bowel disease (IBD) in Ireland, with at least 20,000 of those affected by Crohn’s disease or ulcerative colitis.
But despite its prevalence, these illnesses are often spoken about in hushed tones in society. When they are mentioned, comments can sometimes lack empathy and display a misunderstanding of the condition.
Often driving the silence is a fear that well-meaning family and friends may say the wrong thing and embarrass the person with IBD.
“Unless they’ve had a similar experience with IBD, and even sometimes if they have, our loved ones are learning alongside us on how to talk about health, symptoms, treatments and fears,” said psychologist Dr Jennifer Wilson O’Raghallaigh.
“Most of the time, they feel compassion but don’t know exactly how to express it. They worry that they are interfering, or being nosey, or that they might say the wrong thing.”
To help banish thoughtless remarks around IBD, Crohn’s and Colitis Ireland have published a new conversation guide. ‘Gut to Know’ aims to help people be understanding, better informed, and ultimately more empathetic, when speaking to someone who has IBD.
“When we have a chronic condition like IBD, we don’t want to burden our loved ones or lose our autonomy. At the same time, we might need help sometimes,” added Dr O’Raghallaigh.
“Using good communication strategies such as those outlined in the ‘Gut to Know’ conversation guide can help smooth over some of the rough patches in negotiating tricky conversations. Ultimately, it will enable family and friends to better offer support in managing the symptoms experienced.”
For Amy Kelly, chief operating officer at Crohn’s and Colitis Ireland, the new guide aims to take a lot of the guesswork out of striking up a conversation about IBD.
“As someone who lives with Crohn’s disease, I know only too well how worried family, friends and colleagues have been at times about wanting to say the right thing and not wanting to put their foot in it,” she said.
“This new guide offers a really useful starting point and go-to resource for people who want to support the person with IBD in their lives and to do so in a way which is considerate and thoughtful.
“Unfortunately, the lived reality for many people with IBD is that they often feel judged because their symptoms aren’t always visible. This guide aims to change that and to let people with IBD know that they are understood and, perhaps most importantly, believed.”
The guide was launched ahead of World IBD Day on May 19. Marking the day, Crohn’s and Colitis Ireland will a patient webinar, entitled ‘IBD 101’.
Consultant Gastroenterologist at Tallaght University Hospital, Prof Anthony O’Connor, will provide an introduction to IBD, including symptoms, diagnosis, treatment, coping strategies and supports available.
Also contributing to the online discussion will be Dr O’Raghallaigh and two well-known faces directly impacted by the disease – Armagh GAA All-Ireland champion Niall Grimley and ‘Gogglebox Ireland’ star Sarah Reilly.
Niall was diagnosed with colitis in May 2021, which he initially found hard to accept.
“Back in 2020, I was in a lot of pain and discomfort before being diagnosed the following year. While I have since been hospitalised twice, thankfully, now, my symptoms are under control. I take fortnightly injections of a biologic medicine which allows me to live a normal life with my IBD in the background,” he said.
“It took me nearly three years to accept that I have this disease. Today, my view is that a positive approach brings about a positive outcome. I try to deal with things and move forward.”
Sarah said that her Crohn’s diagnosis had a significant impact on her mental health, but the understanding and support of people around her was crucial.
“It’s so important to speak up about how you are feeling which is something that I struggled to do. It’s hard to explain to everyone in your life what Crohn’s is and how it impacts you. It can be exhausting to even try. However, if those around you know and understand, it can really bring a lot of relief to you,” she said.
